Who else caught it "early" but still treating months to years later?

Traveler said...
Octobrsky, as I was reading through this thread, looking at your responses, what came to mind with your symptoms returning each time you were under some kind of stress - that's what I was thinking - a co-infection that wasn't treated properly.

In order to get some stamina back for me, it took focusing on viral treatments - I'm still not there, but it made a huge improvement with my own stamina. I would very much encourage you to look into the other possible infections you may have and be sure that they all get treated well.

Absolutely. My Dr. suspects Bart. And it's interesting you mention viral treatment. I tried working for the first time 5 yrs after treatment & got a cold about 5 months in that lasted for 2 months. I was feeling really run down, saw my pcp & she tested me for parvo. I was highly positive for long standing infection. I had to stop working & did recover but it was when I tried working again 2 yrs later that my tick borne symptoms started coming back.

Definitely unresolved issues. That's why I posted for ND recommendations. I think I need more than ABX. Thanks for your input. You are one of the voices of wisdom here. I guess you've earned it the hard way.

Fronton said...

Octobrsky13 said...

Girlie said...
So you still had symptoms when you stopped treatment?

I didn't have symptoms when I stopped treatment but at times of illness (cold) I would get a flare - my face would feel numb, mouth twitching & if I had a bad night of no sleep or fatigue from doing too much I would get vertigo/dizziness (never had that before the tick bite), & pressure/tearing in my left eye.

I felt normal (relatively), functioned normally, but still had to be careful. Symptoms would pass so I knew my immune system was handling what was left. And didn't have the stamina that I had pre-Lyme.

Interesting you mention this. I just recovered from the flu. It was really bad. It caused a huge lyme flare that took about 4 weeks to finally settle down. I think this is actually a pretty reliable test for infection. . . That is, if you get sick with a non-lyme illness does it cause a Lyme flare? If yes then keep treating and if no you may be good to go. I also wonder if getting sick causes some of the Lyme biofilms/cysts to open up, enabling more killing. May be a good thing.

It's a dilemma - when to stop treating. I've seen several LLMD's. One said he didn't think I was ever in remission b/c of flares. But I was symptom free for several months before I stopped treatment. The flares happened over time and always passed.

The Dr. I see now says that the majority of his patients get to about 90-95% wellness. That's where I felt I was so I call it remission. And I've talked to others who have said they didn't really feel well until some time after they stopped treatment. You may not really know until you stop. You may still feel really crappy from a cold or flu while you're treating, but your immune system may kick back into gear after you stop.